At home with dementia

Recently I was lucky to be able to attend the opening of the Building Research Establishment (BRE) new dementia home and exhibition. Based on evidence (as indicated in the exhibition poster photographed here), this carefully designed building, its fixtures and fittings are helping us think more widely about the increasing numbers of us that will be living with, or caring for, someone with dementia. The house is designed to help recognition of spaces in the home and ability to use it better, with kitchen and bathroom amenities to cater for changing needs and carefully selected colours to help distinguish the spaces and surfaces. It also has a chair designed for appropriate exercise and curtains with a different edge to help the occupier distinguish the function – all things we can think about in our own homes when the time comes.

As our population ages, more and more of us will be affected with degenerative disease such as dementia. Many of us have someone close to us who we have seen suffer, be distressed, aggressive maybe. They may find it hard to deal with noise or activity, have become unable to perform simple functions, and lost ability to remember things they have just done, like put on the taps and walk away or fail to remember how to switch on the toaster.

It’s hard for the person with dementia, but it’s equally hard for those they live with or who have responsibilities toward them, as well as the wider family and friends, in trying to get the right individual package of services in place to help them stay in their home for as long as they are able. Besides health and social care needs, a range of changing home adaptations may become necessary to help maintain independence for as long as possible. NICE Guidance NG97 published in June 2018 (Dementia: assessment, management and support for people living with dementia and their carers) is a useful source of evidence to help inform decision making.

There has been an emphasis on working toward developing better living environments in the first place that cater for our ageing population’s needs. However with an lack of sufficient existing housing stock that is purpose designed to enable us to easily age in place, lots of organisations are working toward creating better homes throughout the lifecourse, in particular in later life.

Care and Repair continue to support people to age well in their own homes with independence and dignity, helping better connect housing, health and social care services and to work with older people so that they can make their own informed decisions (see for example case studies in Stewart et al, 2017; Stewart and Lynch, 2018). This new research from the Centre for Ageing Better – Homes that help: A personal and professional perspective on home adaptations – helps remind us what is should be about. It’s not surprising that people don’t want their homes filled with clinical looking, intrusive feeling adaptations, or that the process can be complex and lengthy when it needn’t be, and that people have their own views on things they might like to meet their needs and how this fits with their overall home environment including others living in the household. Some outlets are working to offer better choices such as the Bristol Home Independence Centre – but these remain few and far between.

I have spent several years trying to better understand Alzheimer’s in particular and what we can do about it. I’ve met some amazing and inspiring people and it has helped me keep going in trying to find better ways forward. Home, health and social care are crucial, but only part of the story: there are also other factors to think about in more creatively enhancing quality of life. There are a range of opportunities, although these are unfortunately very dispersed and not ‘mainstream’. For example the Wellcome Trust in Euston recently supported Created Out of Mind including a workshop I attended which explored the role of the arts to help support those living with dementia and those who care for them. You can read more here. I’ve also visited Age Exchange in Blackheath which helps older people to improve their lives through reminiscence and the arts for those living with dementia and their carers, finding that their creative approach helps with memory recall (see also case study in Stewart et al, 2017).

The Dementia Services Development Centre at Stirling University believes that housing will be increasingly important in helping those with dementia and similarly Loughborough University also carries out dementia research helping find new options in diagnosis and exploring how risk reduction can be factored into the home environment through better understanding of cognition, gait, activity and physiology. In fact Loughborough’s research and their research provided much evidence for the BRE dementia house mentioned above.

Some local authorities have found innovative ways of funding private sector housing renewal and home adaptations and are working toward developing Dementia Dwelling Grants (see for example Stewart and Lynch, 2018), though these remain in early stages. They will need creative and innovative thinking to respond not just to home adaptations to meet changing physical needs but also to help dynamically support cognitive decline.

What has also struck me as I have learnt about dementia both professionally and personally is the sheer numbers and determination involved in trying to make things better and to have a better understanding of what that it means for us all, and in so many ways. Housing can be pivotal in finding multiple ways forward.

Photographs of interiors and exhibition poster taken with kind permission of the BRE.